Family and Caregiver Schizophrenia Discussion Forum

Hello everyone. My experience of living with a psychosis sufferer

Hello, I’m new to the community so thought I would just post my story. My wife has suffered from psychosis for over two years now. Things reached a nadir in summer 2019 when she had to be sectioned. Despite refusing to accept she was ill, she eventually agreed to take medication in order to be released from hospital.
Things gradually improved when she was on her meds, despite her not enjoying the side effects, and she gradually became her real self again. But she still refused to accept she was ill and came off her meds again at a time when the doctor had initially planned to cut the dosage in half.
The symptoms returned again within a week or so, sending myself and our seven year old daughter back into the depths of despair.
Her psychosis has needed police intervention three times since then, once for a minor assault on me and twice for threatening a neighbour during an explosive row. Yet she has managed to hide her symptoms when assessed by police psychiatrists so each time she has just been sent home for me to deal with.
I’ve found this hard to deal with and can’t take the prospect of dealing with this long term.
Since the last time police were called, in October, it has been quiet and there have been no violent rows.
But we still clash regularly, mainly due to disagreements on how to raise our daughter. When in psychosis my wife just let’s our daughter do anything she wants and spoils her with sweets, presents, cakes. This has led to weight gain for our daughter and whenever I try to make her more healthy it leads to a row.
This is mainly because my wife has fallen out with my parents and has a delusion they deprived me of sugar as a kid and are now trying to control everything from afar again.
I find myself getting quite low at times. It’s tough because I want to look after my wife and get her better but she refuses any help. She is also type 2 diabetic but refuses to accept this too, regularly eating cakes and sweets herself.
It’s hard from my wife as she is from Thailand and doesn’t have any family here in the UK. We have been married 14 years but now merely co-exist rather than having a loving relationship. It’s hard for me to have feelings for her after her condition has made life so tough for our whole family.
If anyone finds themselves in a similar situation, I would love to hear how you cope with things.

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Hello @Monkey67 . I am surprised that you haven’t had an answer from a spouse caregiver, as several are on this site, perhaps they aren’t online right now.

I can understand your despair at your wife’s psychosis, especially after 14 years of marriage. My daughter was 32 when her psychosis caused her 5 year live-in job doing maintenance and cleaning at a large apartment building to end as the fact she was always talking to “someone” became noticeable to others. I took her in, not knowing she was ill, and it was the start of the worst 2.5 years of my life as her psychosis deepened into her becoming a screaming hermit in the back bedroom of my home.

It took 40 or so police visit to my home, 5 forced hospitalizations, 2 arrests, and finally court ordered medication to get and keep her on a medication that worked. Her recovery to her new life was hampered by my reluctance in the beginning to call police, force hospitalization and “trick” her into staying on her meds when her court order ended. I was near hopeless and ruin of my own health from lack of sleep when the last arrest happened (outside of my home so I didn’t call the police that time). By then I knew what medicines worked and which didn’t, what to tell the judge to get his help with medicating her, and how to “tell the story” so she would stay on her meds. Getting a person to STAY on their meds is THE biggest struggle, as the great majority of those suffering from schizophrenia have NO insight into their own mental state, so don’t think they need psychiatrists, hospitalizations or medicine.

There are posts on this site from spouses/caregivers who stayed, spouses/caregivers who left, and spouses/caregivers who maintained 2 homes after their loved one was stricken with schizophrenia. Each situation is different and no one will judge any decisions you make on how to handle yours and your daughter’s situation with your wife.

I wish you the best, it is a years long war usually to fight this awful disease which destroys lives in unimaginable ways. .But there are successes to be had in many cases, if hope is not lost along the way.

Thanks for your reply and for sharing your own story with me. It’s horrible when you so desperately want someone to get help but they refuse. You feel so powerless.
What worries me most is the effect it has on our daughter as she is definitely being hampered by it. When in psychosis, my wife has zero parenting skills and terribly spoils our daughter. When I try to discipline or encourage healthier eating it just leads to rows as my wife accuses me of trying to “control” everything. It’s horrible to say but I now just wish for my wife to be in hospital so I can reset my daughter’s life and start encouraging better habits in her.

Sometimes getting your loved one hospitalized is the way to a new life for them. Sometimes it takes many times until they will stay on meds. I can’t imagine if my daughter had had a child or how she would have treated them during her years of psychosis. So I am not really able to give you any advice, just to support what choices you feel you must make. Try not to doubt your own decisions, whatever they may be. You know your situation best.

Thanks, we will see how it goes. She has been hospitalised once and initially stayed on the meds but then came off them and we went back to square one. Will see how things go

No matter what choices you make, keep hoping. Sometimes things come together to get and keep a loved on on meds, or whatever else might calm their psychosis.

I’m so sorry, @Monkey67. I am one of the spouses on this forum, and as @oldladyblue surmised, I haven’t been online much, mostly because things have been much better at home.

To give you my story as briefly as possible, my husband and I both have a family history of schizophrenia (his mother, my paternal grandfather and sister). We met when we were both past the average ages of onset, so it came as a complete surprise to me when my husband started to experience paranoid delusions and other symptoms of thought disorder about eight years ago now and when he was well into middle age. In retrospect, it seems likely that he’d experienced minor symptoms off and on for years, but that is speculation on the part of myself and his family, really.

It has been a very rocky road since this, with a lot of chaos and ups and downs. We have no children, mostly because it never happened for us, but we also did not go to any extraordinary lengths to have kids, as I was worried about our family histories, even before my husband became symptomatic.

When he first developed symptoms, I was very happy we had no children, as I found it challenging enough to try to get him help.

Ultimately, he stabilized on medication and life was just getting good again when he relapsed after a very long and gradual taper off medication that had started causing symptoms of movement disorder.

This relapse nearly put me over the edge and interestingly, I really started wishing we had had children - perhaps so I would have someone else to take care of or perhaps to feel less alone or perhaps because I was really wanting to leave and the need to protect a child would have given me the excuse, I really don’t know.

He did finally start back on medication in January, which helped pretty quickly with the worst of his symptoms. The repair to our relationship has taken quite a bit longer, though, and it has really only been the past month or two that he has “felt” like the person I married. And I think his experience has been similar, as he experienced me as quite threatening while he was psychotic.

The most hopeful thing I can give you is his changing experience with insight. During his initial decline and recovery, he seemed to have occasional glimmers of insight and he was willing to see a psychiatrist and to take medication, but he never really believed he had experienced delusional thinking.

In contrast, after his relapse and recovery, he was able to look back at his prior experience and say, wow, I was really crazy!

I don’t know what led to this development (more effective medication? Second time through the cycle? More extended period of untreated psychosis that allowed for a more effective before/after? Having seen a psychologist for a few years while stable? Pure luck? All of these things combined?) and of course it provides no guarantee for the future, because if he starts spiraling down again, whether due to increased stress or the medication becoming less effective, he may or may not have enough awareness of the process to take effective action.

But his awareness of his recent past experience has been hugely helpful for our marriage, as it has allowed us a broader space of shared reality than we had first time around, when we both felt trapped in separate hells. And I don’t think hell remains hell, or certainly not to the same degree, when you are able to share it with your spouse. Or that’s how it feels to my husband and myself, at any rate.

I don’t know if any of this is helpful, @Monkey67, except maybe along similar lines of not being alone in your reality of living with a spouse who suffers from psychosis? There are a lot of us out there, and I certainly get comfort from the sharing of experiences with others who share at least certain aspects of my circumstances.

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Thanks for your message. It has given me some hope. I’m glad things have been better for you of late. Hopefully some insight will come eventually for my wife too

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